Asperger’s / autism, alexithymia, and apathy

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Today is a good day to connect dots. Dot-connecting brings calm and contentment, weaving together various loose ends that might otherwise hang out helplessly, waving in the air.

Historically, I have often struggled with where to start. And here lies another liberation brought to me by my autism spectrum discovery: when in doubt, start there, with the autism.

OK, so I’ll start there, mapping it in the center of virtual paper and drawing lines between connections, that fan out. I’m autistic. Right there in the center of the virtual blank doodle-space.

Being autistic has come bundled with a certain amount of alexithymia. Alexithymia is represented by a second dot, and a connecting line can immediately be drawn between the two. Alexithymia, for those new to this term, can be defined as a struggle with identifying and expressing or communicating one’s emotions.

The irony here, for me, is that all these years (nearly four decades!), I didn’t even know that that term even applied to me. I always figured I knew what I was feeling, and could communicate it rather…neurotypically. All this time, I must have been subconsciously shrugging off that which I could not readily define.

It was only after discovering the possibility that I might be on the Asperger’s/autism spectrum last year and researching the topic to remote ends of the earth, that I acquired a new arsenal of concepts and the accompanying vocabulary. Alexithymia was included in the lexicon, and for the first time, I gave thought to the idea that I might be alexithymic, too. After all, every other speck of autistic traits had me nodding vigorously in the affirmative, so why not this one, too?

So now we have autism in the middle of the virtual page and a connecting line drawn to alexithymia, somewhere less centric, but still quite in the foreground.

Alexithymia muddies my waters. From there, the dots become much less clear and slam-dunk. It could probably be a central node of its own in my mind’s doodle-space.

Keep doodling, says the Inner Critic, although she is in a gentle and sympathetic mood today, an anomaly for which I’m appreciative. What else comes into play here?

I have a list of things that I think I can rule out. These concepts, however, are subject to alexithymic meddling, so there’s always a nagging question about whether or not they can be trusted. But since alexithymia is a universal constant in my world, I must continue on, taking it into account, but not second-guessing myself too harshly.

I don’t feel like crying. That’s a good thing.

I don’t even feel like I’m down.

I don’t feel overwhelmed.

I don’t feel angry.

I don’t feel like my nervous system is frayed or fried.

I don’t feel physically fatigued.

I’m no longer distracted by physical pain.

Those are all good things.

From there, however, the fog rolls in.

Do I feel helpless or hopeless? Sometimes I can tell right away, but not this time.

Surprisingly, another ready answer pops into my head: apathy. Another one: boredom. And another: restlessness. And yet another: a sort of soul-fatigue. Or maybe it’s not quite so metaphysical; maybe it’s a simple mental or emotional fatigue. That’s the part I can’t tell.

I can also tell what’s missing: my usual passion for my work. Excitement. Fulfillment. Curiosity. Desire. For any one of those to be missing (let alone all of them) is incredibly unusual for me.

But then I look back to try to determine where I veered off track.

I don’t have to look very far.

In the past 6 weeks alone, I’ve been through several yins and yangs.

I think it kicked off with the brain-tank that occurred unexpectedly when I began my health improvement journey and stopped kretek use cold turkey. I felt like my brain fell asleep.

At the same time, though, I began engaging in physical exercise and taking several excellent supplements. My blood began to re-oxygenate. I donated some blood to save the life of someone who needed blood and to thin my own blood out.

Right after that, I encountered a bout of physical pain that would take more than a month to resolve.

In through there, I also traveled halfway across the US, which equates to over 1,000 miles and 2 time zones. Carrying heavy luggage. Getting used to a new place, even if it was just for a few days. Being surrounded by hundreds of people. Trying to modulate myself and prevent overwhelm. It was an amazing conference! But I think the timing was wrong.

The physical pain only worsened when I got home. I had to take more than two weeks off work. I couldn’t find a comfortable position to sit or sleep in. As painful as it was, I paced the apartment and office restlessly, not knowing what else to do with myself. And of course, my attempts to establish a physical exercise routine came to a halt.

I ended up resorting to narcotics, prescription and herbal (separately, of course, and all legal) for the pain, which knocked me out–to sleep, from driving, from thinking, from living. For several weeks, I couldn’t drive, work, think, or much else. Obviously, I had to stop all other supplements; I didn’t want to run into any nasty drug interactions, nor did I really feel like swallowing a bunch of pills and water when I was already feeling the narcotic side effect of nausea.

Between the pain and the narcotic fog, everything was a blur.

In through there, we had a death in the family, and several of my friends hit hard times. Luckily by then, I had found the option of vaporized nicotine, which brought my brain back (somewhat) online.

And I got the news that I would very likely eventually need neurosurgery on my neck, although the timeframe and the outcome are anybody’s guess. And I have no health insurance at all.

Each of these factors, events, and such, could all be considered “nodes” on my virtual doodle-sheet, linked to the alexithymia with bidirectional arrows.

Things are better now. As I mentioned, the pain is gone, I’m at peace with my aunt’s passing, I’m driving again, I’ve figured out how to finance my neck surgery should it come to pass, and so on.

But my brain went flat in the process. Or rather, the heart that fuels my brain. I can’t call it an emotional numbness, nor is it an abyss, but it’s definitely an executive function issue, centering mostly on the aspect of motivation. And then there’s that emotional desire, that endless curiosity, that has flatlined.

Back to the virtual doodle-sheet. All of those emotions are likely floating around the periphery, with bidirectional arrows connecting each of them to any of the events and factors I described further above.

I know that this is temporary. Everything is, given enough time.

I can’t say how much I love and appreciate all of the suggestions that have come forth. Given my dissection above, it’s probably no wonder that I feel this way (even if I don’t exactly know what I actually feel) right now.

It’s not bad, necessarily. At least, it doesn’t feel that way. I never can tell. I think I just need a reset, a recharge, and then probably a gentle self-prodding into action.

My first line of self-therapy is to take the wonderful advice offered by the equally-wonderful lovelies who offered them in response to my last post.

At the same time, I’ll employ my usual toolbox of acupuncture, music, and brain exercises.

If I still need a little boost, then I’ll call in the Big Guns: the really cool PhD psychologist who specializes in adults on the Asperger’s/autism spectrum, the one who did my evaluation last November. He also offers ongoing coaching and therapy as needed.

Published by Laina Eartharcher

40 Comments

Can certainly relate. There’s been a lot of different emotions floating in my world these past several months, only some of which I can identify. I like that phrase “soul-fatigue”, though. That sums up a lot for me. I am glad you are figuring out what you have been feeling and how best to tend to its various components. Hoping the very best. Keep being kind to yourself. 💓💓💓

Thank you so much for sharing your thoughts! I love hearing them; I find them very reassuring and comforting, because I know then that it’s not just me 😘😘. I hope you get a similar comfort/reassuring feeling! ❤️💞. Thank you also for your encouragement; being kind to ourselves is so crucial 😘💖🌟💖

Our whole little group is having such a difficult time right now. I for one am so thankful for everyone sharing their struggles. Not so much that misery loves company but it’s nice to know I’m not alone. There is so much support and it’s so helpful!
Sending out love & hugs💌💌💌💌☯🌺🌺🌼💐🌸💞💖😘😘

Awww! I agree, Dearest Dude, I’m so thankful for all the sharing of experience and perspectives; it’s really super-helpful to know that none of us is truly alone, and that shizz happens to the best of us 💚💙. You expressed my exact sentiment so perfectly! 😘😘💓💟💝🌷🌟💌💌🌈🌺💗☮🌸🌺💞

I relate too. So much. See, from an early age I was denied my emotions/told they were of little significance compared to my Mother’s. And then, I was a receptacle for her unwanted emotions… they were projected on to me and I woke up one day, 30 years old, no idea who I was or what I felt. And I’m returning from the numb. Thank you for this. Xoxo

I’m glad to hear that you have a game plan in place. That’s such an important step forward. For me, I’m still in a state of definite overwhelm, where all the things I have to deal with run around my brain like little rabbits. And they don’t run in orderly circles either. Every time I think I’ve got a handle on one, two more pop up like Columbo: just one more thing…
All the while little clouds of doom combine over my head into one big heavy cloud, weighing me down, and if it all gets too much it’s time for some tears in the toilet…I hesitate to call this a meltdown, but maybe it is. A mini-meltdown.
Sorry to use your comment thread for an extended moan, but I agree with King Ben’s Grandma that it’s good to share, and I appreciate other people sharing, too.
Sending you good wishes for your game plan and I hope that you have found the path out of the thicket 💖💖🌈😘🌵

A mini-meltdown is possible 😘💐🌸🌺. Could it also be a shutdown of sorts? What you describe, I can relate to very much 💚💙. Maybe even a combo of meltdown and shutdown? Maybe there’s a meltdown-shutdown spectrum somewhere 😘❤️. I hope the clouds break up and let the sunshine through for you soon, my lovely! I’ve been in a similar place, and it isn’t fun 🌷🌺🌷. Thank you so much for your warm wishes, and I’m sending mine to you in turn! I hope your thicket contains a clearing of relief 💞🌈💞💟💟

I always feel a little better after I let it out. Sharing helps me & it let’s others know they aren’t alone. Life kept piling it in me too. I had to *retreat* for a couple days. Mini shutdown. It happens to everyone, even NT peeps (or honorary ND 😜).
Take care if you however you need to! Sending hugs and positive energy 💌💌💌💌🌈✨💫🌠💞☯🕊🍀💐🌺🌼🌸

Holy cow that’s a lot of stuff. o_o Heartfelt hugs, really sorry about the neck. Personal experience + friends with that kind of junk, so hopefully you get some relief. I hafta step back from attending real life to keep a function level, and I tell everyone “There is no ‘have to’ in this life.” We choose to take care of ourselves over going over socially pushed lines. Hugs for the death, same here. too much. Ok, back to the point. Would it seem pertinent to suggest that autism and fibromyalgia heavily impact each other, since both involve the nervous system? I’ve had so many years to think about this. I get headaches so very quickly in noisy chaotic ‘fun’ atmospheres that go away within minutes of leaving the area, but they are very different from fibro headaches that I get from having to sit in waiting room chairs too long, so I can tell them apart. The similarity comes in the way my entire nervous system starts a looped ‘ringing’ as if an old fashioned microphone is feeding back on itself through speakers. I feel like autism makes my much more sensitive to this fibro feedback and jacks it up above what ‘normals’ feel with their fibro. I find the nerve reverb more disabling than the actual muscle hardening. The regular pain is one thing, the sensation overload is another, and once that starts, I descend into hell and become socially nonfunctional. I legally cannot even hold the most minor job because it takes so little to disorient me and I can’t follow directions correctly under duress, even though I’ve been told a few times my IQ is through the roof. I’ve had to put together a medical team just to help me manage medication problems. For example, a neurologist wants me on amitriptyline and my psychiatrist said definitely not because it actually makes mood swings worse. I’m not typical for head meds OR nerve meds, and I spent years being a guinea pig finding that out. I’m seeing such huge leaps in brain studies and how the nervous system works that I’m hoping autism and fibromyalgia are what really breaks through and makes it easier to define and work with other challenges. I feel like this is about as cutting edge as it gets, and it’s up to us living this way to keep finding words that help keep a positive spin on the way the world approaches challenged people, since there are so many of us everywhere with all kinds of challenges. I believe this is what the true faith in humanity is all about, the compassion to understand and work with what is real, not just ‘fix’ it or delete the problem all together. Sorry so long, and I’m sorry your summer is so hard. Your wording is awesome though. ❤

Thank you so much, friend! 😊. I really appreciate your kindness and support 👍🏼. It means a lot to me ❤️

“Would it seem pertinent to suggest that autism and fibromyalgia heavily impact each other, since both involve the nervous system?”

I think you’re definitely onto something here! I’ve been doing a little reading and apparently there’s a fairly large crossover between the Asperger’s/autism spectrum and a genetic collagen-producing issue known as Ehlers-Danlos Syndrome, or EDS, which apparently often gets misdiagnosed as fibromyalgia because the symptom profile can look so similar in some 💜. From what I’ve read, EDS can also present with neurological issues; I’m pretty sure it’s not the underlying basis for autism, as there are still more spectrum peeps without EDS than with it, and there are non-spectrum peeps with EDS. But apparently something like 20% of spectrum peeps do also have EDS (raises hand) 😊. That’s just one potential mechanism of fibro, though, and apparently there are several others. Yeah, they’re still figuring it out, and I’m with you – I’m hopeful that research may be on the verge of a breakthrough that really starts to put pieces together 😁👍🏼.

When I’m having a headache (I get different types 😊), my nervous system does seem more sensitive. Suddenly, the hearing loss actually improves, even if it’s just for that day 😱. Yeah, I agree – the sensory overload and the pain are likely different things but yep, in my experience, too, they can relate to each other. Mine can cause each other lol 😉.

“it’s up to us living this way to keep finding words that help keep a positive spin on the way the world approaches challenged people, since there are so many of us everywhere with all kinds of challenges. I believe this is what the true faith in humanity is all about, the compassion to understand and work with what is real, not just ‘fix’ it or delete the problem all together.”

Amen, girl! 👏🏼👏🏼👏🏼

No worries for longer comments! Please don’t hesitate to feel free! I’m always glad to read them and I love learning about others and gaining perspective 👍🏼. I think sharing makes us all stronger, whoever wants to take it in 💟💟

a fairly late comment, but I just read this post … hopefully you are already feeling better 😉
… when I was reading this, my first thought was “that sounds like depression” … Earlier this year, during the whole falling apart and putting myself together that my Autism diagnosis came in the middle of, I realised that I have actually been getting more and more anxious and depressed for several years … possibly have been on and off for most of my life … I had never suspected I was either of those things at the time … except maybe a few times, when things happened in my life where I expected to be stressed and thought it was only temporary (like when my ex husband walked out on me) … but I have since found out that depression and anxiety don’t always feel like the “textbook” says they do … I never felt “blue” or sad, in fact I think the more depressed I am, the less I am likely to actually cry … i just felt lost and … empty … pretty much all the stuff you have described …
(and the anxiety … am thinking I have probably had some of that all my life, so I just thought that was normal 😉
The weird thing is … as soon as I worked out what the heck was going on with all that emotion stuff … I suddenly felt a whole lot better! … probably a combination of mindfulness (some daily 10 minute sessions I was doing with an app on my phone) and the fact that I had actually been getting obsessed and stressed about not knowing what all the feelings and stuff were, and why I felt like I did … ahrgh – LOL
Actually I started to feel like that a bit this week actually … until I reminded myself that I need to stop worrying about the stuff I was starting to worry about again, and go and do a few fun things this weekend – now feeling much better again, even though I have not actually done the fun things yet – lol

Oh no! In reviewing my blog I noticed that WP ate a few of my replies to comments 😳😳. I’m so sorry that your comment appeared to go unanswered 💞💞

First of all, thank you so much! Your kindness is so much appreciated 💚💙

Yep, finally during the second half of last month (October lol) I started to feel noticeably better 👍🏼👍🏼. It *was* a depression of sorts, with so much Life Stuff hitting at once 💜. Sounds like you’ve been through some really rough times yourself! 💐💐

I can definitely relate to your emotion patterns! 🌹🌷. I love your ideas of mindfulness and play 👏🏼👏🏼😁👍🏼. It’s good to get out and get active when possible, and it’s always good to laugh ❣❣

Thank you for your words. I’m relentless about learning, it’s all the other things that freak me out to the point that the thought of the task causes me to panic and freeze. I feel like a border collie whose tasked with fighting bears, it involves doing something that is difficult- seemingly impossible. I freeze, fight, and flee, in that order. This past year, I had an MS attack stole my speech intermittently my version of Alexthymia (ic), I lost my job (unable to accommodate disability without undue hardship to employer), and 2 weeks later my 22 year old son died by suicide. Up until then I was able to live satisfactorily with my neurodiversity. The physical and emotional traumas have put me off-line. Your post gave me a new set of questions to ask my neurologist who insists it is due to the use of medical herb. My herb doc disagrees. The herb is one of my tools to help me focus.

Oh my goodness, what you’ve been through lately! This year appears to have been quite cruel to you 💐💞. I have similar reactions–panic, freeze, obsess, and everything seems impossible. It’s during these times that I dream of escaping. I guess that’s the “flee” part 😳😉. Personally, I’m all about the medical herb 👍🏼👍🏼. I don’t use it myself, but I wish the stigma would go away and the medical establishment would embrace it. The benefits are right there in the research; all they have to do is pick up a medical journal lol 😊💗. If the risk/expense involved in obtaining it were relaxed, I’d probably revisit it as an option for me, too. Because omg the anxiety sometimes 😳🌺🌷💚

This is extremely insightful! “All this time, I figured I must have been subconsciously shrugging off that which I could not readily define.” — This rang VERY true and has prompted some much-needed self-acknowledgement of my own struggles with alexithymia… thank you 🙂